Neuropathy that comes and goes

Hello @graziellaz, Welcome to Connect. I will be 82 later this month and have had neuropathy that started gradually in my toes, then into the feet and legs over the years. I don't have any pain, just the numbness and some tingling so there isn't much that helps except to stay active and possibly work on strengthening the legs (just my humble, non medical opinion). There is another discussion that you might want to scan through to learn what others have shared:
-- Neuropathy symptoms come and go - is this typical?: https://connect.mayoclinic.org/discussion/neuropathy-symptoms-come-and-go-is-this-typical/

The Foundation for Peripheral Neuropathy has a lot of helpful information on living well with neuropathy that might be helpful - https://www.foundationforpn.org/lifestyles/. The also have quite a few webinars on learning more about the condition which I've found helpful. Here's one that I watched last year that was helpful - Session 5: Living Well with Peripheral Neuropathy: Enhancing Quality of Life - https://www.youtube.com/watch?v=xkRvvaK4_1s

You might want to write down a list of your questions and concerns to take with you to your husbands upcoming appointment with the neurologist to help you get some answers. I find that if I write my questions down that I'm more likely to not forget them when talking with the doctors. Has your husband tried different shoes to see if that might help with the walking?

Hi,
I have a similar problem with my legs not doing what the brain tells them to do always. Particularly my left leg. The brain thinks the leg has moved but is hasn't and starts moving the right leg and over I would go. My brain has figured out to check the left leg has moved before moving the right leg. I had a really bad time trying to stand let alone walk initially around 18 months ago, but now the brain is quick to respond when I haven't taken the step as ordered. I have been able to hang up my walking sticks, for the moment. I'm 73 and have Autonomic polyneuropathy which is all the nerves affected which get or send corrupted signals to and from the brain. It doesn't always happen but enough to keep me on edge waiting for the next bout. The worst time I had I was being temporarily paralyzed while walking. I was left unable to step or move from the waist down. Fortunately both feet were on the ground but the right foot couldn't be moved for the next step, I couldn't even back up the left foot. I remember shuffling along prior but after was walked normally again. I shudder to think what might have happened had only one foot been on the ground. Felt like I was super glued to the floor. I now know to watch out for when I start shuffling as problems with my legs are close behind.
Cheers

@graziellaz
Has your husband had EMGs/nerve conduction studies of his upper and lower limbs by the neurologists? What were the results? Did they do a skin punch biopsy to test for small fiber neuropathy?

Has your husband had MRIs of his cervical and lumbar spine to see if he has any compression/flattening of his spinal cord or nerve roots? Has he seen an orthopedic spine specialist for a full evaluation after falling? Cervical spinal cord compression can affect everything below that level, including bladder/bowel and legs. Does your husband have any issues with his bowel/bladder control or his arms/hands (drops things or his handwriting has worsened)?

@graziellaz
Did they do a full neuropathy blood panel? What were the results? What made them think he had CIDP which is autoimmune? Did he see a rheumatologist?

@graziellaz
Did your husband ever get a MRI of his brain?

Yes, at least 4 and 2 spinal taps, among other things. One of the neurologist said that he has "white brain matter disease" but another neurologist said that is not unusual for someone his age and for someone who has had diabetes for over 40 years. So we are still in limbo.

Yes he has had EMGs for upper and lower limbs and they all show the neuropathy is not severe. Neurologist mentioned the punch biopsy test but thought since the results were not severe, he didn't want to put him through that. But I will mention it to the neurologist we are seeing in May. His whole body has had MRIs including cervical and lumbar spine. The imbalance (which causes some of the falls) has been linked to areas of his brain that have been damaged due to over 40 years of diabetes (sometimes not well controlled). But it's the strong legs one day and weak legs the next that is driving us crazy and no doctor so far can seem to explain. One doctor told us that the brain is like out space and what he has may not have been "discovered" yet. That's why I was asking if anyone else has this problem of waxing and waning of their muscles from day to day.
His hand sometimes shakes but we were told he has Parkinsonism which affects that.
Doesn't really have any issues with bowel/bladder.
Thank you for your thoughts on this.

My husband has a similar issue with his left leg. If the PT person tells him to "march" he can sometimes get the leg to move better. Weird. So what have you been doing/taking to help you with this. I will definitely ask about Autonomic Polyneuropathy but his walking seems to be fine for quite a few days and then it tanks where he can hardly walk. We have had good walking for maybe a week and then we are right back to needing a walker and even then he can fall or can't move (mostly his left leg).
Thanks for your information.

Thank you so much for your wonderful information. I will definitely review it all. Yes, I always write down my questions -- I have a small notebook I use so I don't lose anything. Every doctor seems to have their "take" on what it is. This doctor we are going to took 7 months to get an appointment so we are hoping he will be give us some guidance/insight as what we are dealing with. It's the walking that is good for 2-3 days and then tanks for a few days that is really driving us crazy. It's whether he has PT or not.
I will definitely look into the link about symptoms that come and go as this describes my husband.
Thank you.

@graziellaz
Parkinsonism and white matter disease (brain damage) can affect walking and may be behind the inconsistencies with his ability, control and strength to walk.